A naked woman with lupus lying down reaches toward her pelvis as a colorful burst emanates from the region. Her partner's hand gently touches her leg.

Lust and Lupus: Is the Sex Really Worth It? Part 1

I guess I am just lucky, but not "play the lotto" lucky. Let’s be real: I won the genetic jackpot with several autoimmune diseases. As if relationships are not hard enough, now throw in Lupus. Between chronic pain, medication-induced side effects, and lowered immunity – plenty can go wrong. These all affect your state of mind, body, confidence, and SEX. I mean nothing is sexier than vaginal tearing during sexual intercourse. Right? Do you give up sex for your chronic disease? Of course not. However, unlike the average individual, there is a little more work that goes into lust and lupus.

One of the biological things (yes, sex) that naturally increases serotonin (your happy hormone) and psychologically proven to keep you close to your partner should not be prevented by disease. However, unlike the average human, it’s going to take work and introspection on your part to solve this dilemma. Here are some items I have experienced with lust and lupus, and some tips to get through them.

Lupus medications that affect sex

Medications like biologics (Enbrel, Humira, Xeljanz, etc.) and methotrexate suppress your immune system. That’s the point, right? Since your body spends all day fighting itself, these drugs simply turn off your immune system making you more susceptible to disease. Issues like increased UTIs, kidney infections and increased yeast infections come into play with sex.

The key is to know your body and pay attention to the details and signs. Awareness is key. Talk to your urologist or rheumatologist if you experience any signs of increased pain urinating, flank pain, increased urination, increased chills and fevers (which is typical of lupus patients already), increased vomiting, and increased nausea because you may have a UTI. Unresolved UTIs and infections can lead to permanent kidney damage.

Increased yeast infections are also common, increased vaginal puss and itching. Now isn’t that’s sexy? The thought of intercourse while knowing the possible outcomes, makes for a tough decision.

How to enjoy sex with lupus

Is your partner worth it? Is lust worth it? Is the pain worth it? Are weeks in bed worth it? I find YES, most the time. With a refined drug regimen, we can lead an “as normal” life as we desire, it just takes more work than the average person. People living with lupus need to have the desire to want to lead a full life and it’s not perfect.

In working with my doctor over the course of several years (yes, several years), I was not aware of the signs and the fact sexual intercourse was causing issues. UTIs and yeast infections are virtually non-existent in my life. Once I was on an agnostic and prophylactic regimen, I have almost eliminated both the above.

Tips for sex with lupus

Here are some tips for keeping lust and sex alive in your relationships with lupus:

1. Shower before sex

If you and your partner shower before and after intercourse will help eliminate some factors of infection. Showering after defecating (yes, pooping) will also eliminate infection at the time of intercourse. It may take away spontaneity, but we are not your normal individuals.

2. Lubricate

Use non-water-based lubricants. It makes a huge difference. Take your ego out, talk about your needs with your partner. It will be worth it. Steroids, such as prednisone, dry up the vaginal wall and tissue. Nothing is worse than a dry vagina. Trust me. It’s like cotton mouth every day in your sexual organs. Cute. Tearing of tissue externally and internally, including your clitoris is less than enjoyable. It makes even wearing underwear difficult.

Talk to your OB-GYN about the drugs you are taking. They can help counteract side effects easily. Esterase creams, non-water-based lube, and other medications can help with this. The more hydrated the more fun it will be.

Use lots of lube and reapply as needed during sex. Talk to your partner about your needs. Communication during sex is essential. When you cringe, they think “OMG, they hate sex with me.” But, all you are thinking is “sh*t this hurts.”

It's literally a choice of pain or pleasure. Pick one and only one. What? This sucks. But it is a choice to think long and hard about. Do you stop pain or feel your sexual organs? Damn the universe sucks. This is a decision I have struggled with for years with my partner. You love them and have a great attraction, but things down there just don’t work. This topic is discussed in the sequel article.

3. Check-in on your libido

Serotonin, selective serotonin, and norepinephrine reuptake inhibitors such as Cymbalta, Prozac, and gabapentin are used to dull pain and help manage depression. And who are you kidding?  Who would not occasionally be depressed with this disease? The downfall is decreased sensation in nerve endings and libido, and you get “the meh face” – more on this in part 2. Hmmm, ain't that a b*tch.

4. Communicate, communicate, communicate

So, what it comes down to is essentially communication. Talk, talk, talk. Talk to your doctor. They are your primary source of help. You must be open and honest with them. If they can’t help you no one can.

Be open and honest with your partner with what is going on with your body. Talk to them at a time when the ego is low. Many times, this conversation has turned into an unnecessary fight because my partner wasn’t in the right frame of mind to have it.

Don’t avoid it! Lack of communication leads to resentment and feelings that you do not love your partner. Your partner isn’t a mind reader and they can’t see your physical or mental needs. If you do not let them in on what is going on, they can’t help you. Even worse, your lack of communication can lead to a failed partnership due to the lack of understanding of your needs and struggles.

You will be amazed at the understanding they will have if you let them in. I found it helpful to eliminate all the shame and burden in being able to request things I needed, even if it was time off from sex. If your partner does not understand, maybe they are not the person you should lust for with lupus.

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